How can I have so many positive neurological findings and tests and be told that all of the stiffness/rigid feeling that has slowly developed and worsened the past 3 years be entirely FND?
I was under the impression that FND, not just functional tremor, required a lack of positive neurogenic findings. I had a slight rest tremor onset several years ago, noticed by my girlfriend at the time, over 3 years it turned into my index and thumb as well as my wrist/hand. That entire time I slowly started to feel more and more stiff on my right side of my body which led to a torn right hamstring from a freezing episode and left hip surgery from a foot drop gait that started approx 2 years ago and has just slowly gotten worse.
I am veteran, and the VA refuses to send me for a 2nd opinion and even got angry like children "why don't you just let another neurologist take care of you then" was a literal response from my VA provided Neurologist.
My symptoms did not begin all of the sudden, it has been slow, and upon looking at the non motor of PD it seems to describe me to a T...
Has anyone else experienced a neurologist trying desperately to fit you into the FND category because that was their first guess, or had similar symptoms with no improvement.
I should say that I am a regular user of concentrated marijuana, and I notice extreme relief in my rigidity symptoms and tremor when used throughout the day. I can literally feel immediate relief after smoking and can feel it onset again as the effects of marijuana wear off. I do not get high, I literally feel normal again... Of course telling the VA this makes you look like a drug addict, even though I refuse all pain killers and any non necessary treatments and am a former Search and Rescue instructor trying to return to active duty as a Chaplain.
I should note that the VA neurologist, both of them, didn't understand that my extremely recent hip surgery on my "good leg" didn't function normally yet.
She literally told me I could move my paralyzed hip flexor...this is the level of care we get. I have already been told my hip flexor nerves may be paralyzed for a minimum of 6weeks due to the nature of the surgery and the neurologist acted like it was in my head.... FND is psychiatric primarily, with very few things to support a non psychiatric cause. I have actual, diagnosable things wrong.... And I do not have crazy moments like all of you describe where 3/4s of your body doesn't seem to work correctly. Mine is very consistent with the effects of early onset PD
I have lived with dystonia for more than 20 years and it is caused by three cavernoma in the brain, well the cavernoma in the basal ganglia part of the brain, another in the occipital lobe and the third being the left frontal lobe. All evidenced by MRI scans, previously attended to by a private physiotherapist that I was told had to be stopped because I got cancer and the area being treated was quite close to the cancer area and if there were any random cancer cells I would then be high risk for growing another tumour, now I have had a number of bleeds from the cavernoma and so that’s a heamorragic stroke, again evidenced by MRI scan and treated with the usual therapy etc and then I was told all of this is now FND and a letter was sent to my own doctor explaining that I have FND so I had a chat with both the neurologist and my own doctor and asked what are my symptoms for FND and no answer was offered, I then asked what is the care plan and again no answer was offered other than if I have no unexplained symptoms then there would be no need for a care plan, so I repeated just to clarify, I have a diagnosis with no symptoms and no care plan, so why do I have the diagnosis? And was told this needs looked at again. It has left me with a major mistrust of neurology doctors because I feel there is almost a medical campaign going on to improve the FND numbers because there is no real treatment if you can simply say that the patient has had trauma at some point in their life. I again would argue define trauma because a child gets a row from a parent and becomes jumpy, police personnel, medical personnel,social worker personnel in fact name a job that doesn’t have the potential for trauma of some kind and in real terms the person telling you that you have trauma are effectively deflecting their own trauma onto you because it is of course not possible to have the life skills trained through your job of work to actually work for you and allow you to build up a resilience to the trauma that you may meet in your life.
I actually said this to my family, that this female neurologist that is part of the FND society and her coherts desperately need someone like me to be crammed into their FND box, I forgot to mention I have horrible pronator drift on my affected side as well. I have no trust in neurology right now, my recent hip surgery has garnered all of my trust in Ortho doctors, at least they can recognize the malfunctioning and don't think it is psychiatric. Thank you for your input
For what it’s worth I am inclined to go to the relevant clinician for example, I have ocular dystonia and my optician looks after this in a way I wouldn’t trust a neurologist, like wise jaw issues are cared for by the dentist, joint issues are cared for by physiotherapist which I went private for before I then was able to evidence the need for splints for my hands and the neurologist did on this ocassion refer me to orthotics. The benzodiazepines drugs used for managing spasms if you research adverse side effects will tell you that the respiratory system will be affected whereas in America they use diphenhydramine which is a lot more gentle on your system…..point here is research and read everything you can get access to, professional papers are validated by a colleague before it can be published and the shocking part for me is all of this is available to the professionals
I am actually bringing all of the articles that essentially disprove my VA neurologist to my Primary Care so he can see how foolish they are. It is crazy that they never look at any peer research, they leave college and think that is the end of learning. Again thank you!
Can I recommend if you don’t mind, list your ailments and any scans or blood work you have had done which proves its organically proven, any ill effects from any drugs you have been prescribed research not just side effects but adverse side affects because they are more serious and can cause life threatening issues for you. I was told in January 2019 that there was nothing else to offer me because everything that had been tried had a very poor outcome meaning potential to cause extreme damage worse than what I was already living with. Example for me….you have seizures…response there are three MRI scans on record to show herniated discs and pinched nerves, drug called Baclofen gave me urinary retention backed up to the kidneys and had I not gone to my doctor and been admitted to hospital when I was my kidneys would have stopped working etc…you get the idea and the work is worth the effort because it then puts the onus on them to prove that the diagnosis is correct
An organically proven issue has an explanation and therefore must be true they can’t keep moving the goal post because it’s easier to send you on your way with no help or support. Although I will say this I have actually got much further under my own work and belief that there has to be something out there. I just got noted today that its looking like I have BPPV and have found a physiotherapist that specialises in this and that’s after my own doctor told me there was nothing that could be done I would have to live with it, meaning for me while am healing from the injuries my life is bed or chair and I chose not to accept this so am off again on yet another mission to improve my own life…good luck my friend and do stay in touch this is a tough road we travel but we are not alone xx
Yes most definitely; I will start with normal findings
Blood work is essentially normal, low vitamins and hormones at one point which I had to find out and take care of on my own. This improved quite a lot of things for me.
MRI Brain was Normal over a year ago, EMG was normal (only tested my r arm), and tremor diagnosed as FND.
Abnormal findings, MRI Back/Neck literally every disc bulging, deviates, arthritis or more!
Two Trans Ischemic Attacks at 26, 35; Dysphagia Diagnosed 6 months ago, Hyperreflexia Bilateral Legs, more hyper on Right side. Hypo reflex in right arm. Sleep Behavior Disorder, Urinary Incontinence.
Bilateral hip injuries (surgery), TBI, Shoulder Injuries, Musculoskeletal, etc from military service, multiple incarcerated hernias. Orchiectomy. Adrenal Fatigue, bradykinesia and slight dystonia on affected side (foot/toes).
Clinically low vitamin D (15 total count), Therapeutically low vitamin B, C, E
Additional Symptoms I still experience after 1month hormone/vitamin treatment. Loss of smell approximately 3-4 years ago (can still smell somethings, but cannot really taste food anymore either); Horrible Fatigue, Erectile Dysfunction regardless of Hormones, less appetite.
Right side feels extremely stiff, I feel like the tin man without oil every morning when I wake up. After utilizing inhaled concentrated marijuana at approx 3:30-4am my movement almost immediately returns for a few hours and allows me to get my day started. It wears off by mid morning and I am stuck back in my tin man body.
I started having a hard time holding my tools (electrician) about 3 years ago, didnt think much of it, just dropped everything all the time. Now I can hardly put my hearing aids in with my right hand, my right foot drop caused my walk to be so off that I had to have emergency hip surgery, and about 4 years ago I noticed my leg starting to get stiff, 2 years after that I tore my hamstring from an episode of my leg freezing up while I was running after something. My right leg is the most stiff and worst part of me, and the neurologist at the VA has done almost no examination of it outside a foot tap and reflex test.
I suppose I could discontinue the marijuana and it might possibly make me easier to diagnose, but that is essentially sentencing myself to not function until I see a Private Dr.
Are these the things people normally experience with FND?
I just got a message 'You have been restricted in this community. Please contact this community's administrator to find out why. I suppose criticism of our care is not tolerated here, though this community had nothing to do with it.
Good luck with this website, hopefully it works out, instead of banning newly diagnosed, confused people.
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Diagnosed with MS and FND!!
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It’s hard to accept FND
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